Neuroendocrine Tumors (NETs) Support Group

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Comments (291)

Hi @josey1 I responded to your other post as I have DIPNECH, lung NETs and breast...

https://connect.mayoclinic.org/comment/906759/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

@sadragliz Welcome to the DIPNECH club. Are you being followed by a NETs team?

https://connect.mayoclinic.org/comment/1288226/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

@leahfromsa I too have DIPNECH, was diagnosed in 2018 after I had my right middle lobe...

https://connect.mayoclinic.org/comment/1564244/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1 2:38pm

@jhhaas As my interventional radiologist always says, “With DIPNECH we can walk not run..” It’s so...

https://connect.mayoclinic.org/comment/1568576/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 6 10:49pm

Hello @mimi206 and welcome to the DIPNECH support group on Mayo Connect, I would like to...

https://connect.mayoclinic.org/comment/1250451/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

@californiazebra when I called Cleveland Clinic to ask about their program, the person who called me...

https://connect.mayoclinic.org/comment/1570752/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9 3:58pm

I am not sure who is asking me about diagnostic methods for DIPNECH. I am thinking...

https://connect.mayoclinic.org/comment/1609911/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

@rachismarie Sorry to hear about all you’re going thru. I understand how scary it can all...

https://connect.mayoclinic.org/comment/1181823/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

@nannybb Hi. No, the breast cancer is not related to the NETs/DIPNECH. I actually had the...

https://connect.mayoclinic.org/comment/1541386/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 3:53pm

I had no idea that DIPNECH did not have any somatostatin receptors. Thanks for sharing.

https://connect.mayoclinic.org/comment/1361394/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2025

Hello,I have a 1.4 cm Typical Carcinoid Tumor n 10 DIPNECH nodules 1 is 5.5mm. I...

https://connect.mayoclinic.org/comment/1006873/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2024

@kdubbs Also, you do have Emory University and Winship Cancer Institute there. Because DIPNECH is rare...

https://connect.mayoclinic.org/comment/1532932/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 1:52pm

@mcohan Most doctors, even radiologists, pulmonologists and oncologists haven't even heard of DIPNECH. I recently went...

https://connect.mayoclinic.org/comment/965599/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

DIPNECH means there are too many neuroendocrine cells growing abnormally in the lining of your small...

https://connect.mayoclinic.org/comment/1411349/

Discussion: DO I need 2 teams if I have both Nets-lung and DIPNECH?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2025

@mlbschuler @grec I have both DIPNECH and lung NETs and yes, it is scary to have...

https://connect.mayoclinic.org/comment/1004928/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2024

@dipnech67 Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH...

https://connect.mayoclinic.org/comment/1054381/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

I was just diagnosed with DIPNECH after my surgery to remove a Lung NET that I...

https://connect.mayoclinic.org/comment/1564637/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2 8:11am

There are only about 300 documented cases of DIPNECH which is why most doctors have never...

https://connect.mayoclinic.org/comment/1205680/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

I have breast cancer as well as lung NETs and DIPNECH. My breast cancer is unrelated;...

https://connect.mayoclinic.org/comment/1206124/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 7, 2025

seems to have a lot of people with DIPNECH like me so why doesnt anyone know...

https://connect.mayoclinic.org/comment/1242988/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2025

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